UKDP: Integrated DEmentiA research environment (IDEA)

Lead Research Organisation: University of Bristol
Department Name: Clinical Science at North Bristol

Abstract

The UK Dementias Platform (UKDP) is a radically new approach to dementias research. It brings together data from
around 2,000,000 study participants from 22 cohorts to try and discover the causes of dementia and to find out ways of
slowing it down. The platform has been funded to the level of £12M.
In this proposal we want to improve UK infrastructure for dementia research so that the most can be made of the
opportunity provided by UKDP. We wan to improve the infrastructure by buying important pieces of equipment that will put
the UK at the forefront of dementia research worldwide and by establishing networks of scientists who will work together to
make best use of the equipment.
The three themes of the proposal are imaging, informatics and stem cells.
For imaging we want to establish a network of PET/MR scanning facilities across the UK so that the molecular processes
going on inside the brain that cause dementia can be studied.
For informatics we want to be bring together bas many different types of data as possible and make it easy as possible for
scientists to use them
For stem cells we want to take cells form adults with and without dementia to find out how cells change as the dementias
process begins and progresses.
We believe these proposals will raise standards, reduce costs, and deliver innovative and coordinated research, making
the UK an internationally unique place to study dementia.

Technical Summary

Our objective is to achieve a step-change in UK dementia research capacity through establishing national networks of
existing and emerging centres of excellence in imaging, informatics and cell-biology.
The UK Dementias Platform (UKDP) is a radically new approach to dementias research, providing a highly efficient and
cost-effective translational pipeline from discovery through to early phase trials. UKDP will create closer synergy between
epidemiology and experimental medicine with the re-purposing of epidemiologic cohorts for trials readiness. The size and
depth of phenotyping available to UKDP will deliver a step-change in the complexity and granularity of dementia related
hypothesis testing and accelerate compound development.
Proposed here is an infrastructure of investment and collaboration. Underpinning UKDP is a critical mass of researchers
and resources that will work together to encourage, facilitate, and develop a fully integrated dementia dedicated UK
research environment. This will raise standards, reduce costs, and deliver innovative and coordinated research, to make
the UK an internationally unique research environment. Through its partnership with major academic centres and industry,
UKDP is well positioned to achieve this goal.
Building on the recent MRC investment in UKDP, we propose here to renew and extend the UKDP integrative research
environment with an advanced molecular imaging network strategically located to exploit UKDP cohorts. Also proposed is
an integrated informatics environment to facilitate the location of and access to both data and bio-samples. The third
proposal is for a stem-cells network to promote the use of this important and emerging technology. Each of these elements
adds value to existing infrastructure investments and fills significant gaps in the UK research landscape.

Planned Impact

The current proposal in in support of the UKDP and will become part of the the UKDP impact strategy.
In summary, the UKDP strategy to deliver pact is to develop networks of partnership to actively consult engage the UK
academic community in relation to dementia research focussing on the direction,
technologies and collaborations of the UKDP and the wider UK national infrastructure.
Our aim is to:

1) promote the best possible science
2) create momentum in dementias research by being inclusive of, and synergistic with, other initiatives.
Partnership discussions with industry are already underway with exchanges of ides, interests and needs between
academic and industry stakeholders. Industry have identified their need for access to conversion (early MVI to dementia
cohorts and for experimental medicine studies to conform to regulatory requirements.
We remain committed to raising the profile of contemporary debate about dementia and its treatment. We wish to
encourage a culture of commitment to solving this problem. By increasing awareness at all levels of society we intend to
leverage resources for the platform and for dementia research in general, to increase awareness of the need for earlier
interventions and better targeted treatment in general by health service providers and the public alike.
Engagement with the general public and with patients and carers is a very important part of our mission. This serves not
only to communicate our research findings and their relevance but also to address such issues as stigma in society and the
research culture in the NHS in relation to dementia and older people. In addition to using the platform web-site to
communicate to the general public, we will also liaise with charities and advocate groups such as Age UK and the
Alzheimer's Society to promote our work and findings and to engage them in shaping the work programme.
In addition we will have a dedicated free-phone number available 6 days a week and a communications officer at 50% FTE
over 5 years whose responsibility is to develop and implement a communications and public engagement strategy.

Publications

10 25 50

publication icon
Pennington C (2020) Mixed neuropathology in frontotemporal lobar degeneration. in Amyotrophic lateral sclerosis & frontotemporal degeneration

 
Description Invited to be a member of the NHMRC National Institute for Dementia Research Brain Banking Consultancy Reference Panel in Australia, to to facilitate the selection, and oversee the work, of a suitable Consultant who will investigate options and make recommendations for meeting the needs of Australian researchers for access to brain tissue resources for dementia research.
Geographic Reach Australia 
Policy Influence Type Membership of a guideline committee
 
Description Brains for Dementia Research renewal (BDR3)
Amount £2,638,944 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 11/2018 
End 10/2021
 
Description Network development grants
Amount £227,253 (GBP)
Funding ID ARUK-NAS2016B-1 
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2017 
End 03/2019
 
Description ARUK lab tour, Bristol, June 2017 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Supporters
Results and Impact Hosted tour of South West Dementia Brain Bank on behalf of ARUK, and gave presentation on brain banking in the UK.
Year(s) Of Engagement Activity 2017
 
Description Alzheimer's Research UK Public Meeting, Bristol, July 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Presentation on advances in our understanding and treatment of dementia enabled by brain banking
Year(s) Of Engagement Activity 2015
 
Description Brain Bank interview for the One Show 24/01/2018 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact The South West Dementia Brain Bank featured prominently in the One Show on BBC1. We had very numerous subsequent calls and emails from members of the public, including people wishing to register from brain donation.
Year(s) Of Engagement Activity 2018
URL https://www.bbc.co.uk/iplayer/episode/b09p1j9p/the-one-show-24012018#
 
Description Bristol Neuroscience Festival, March 2016 - Brain banking and dementia research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact The festival was a two-day public science event for all ages from primary school to adult.

It included exhibits, talks, hands-on activities and a Brain Art competition, and the opportunity to hear talks and to meet neuroscience researchers, scientists and local organisations to talk about all things brain-related.
My talk, on brain banking was attended by about 100 people and generated a lot of questions and post-talk discussion.
Year(s) Of Engagement Activity 2016
URL http://www.bristol.ac.uk/neuroscience/bnf/
 
Description Cohort enhancement by use of post-mortem brain tissue to assess vascular function and mechanisms in disease 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Participation in (and presentation at) DPUK workshop to discuss ways of enhancing the research value and use of DPUK cohorts.
Year(s) Of Engagement Activity 2016
 
Description FORGETwest: Find Out about dementia Research; GET involved. West of England. March 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Talk on the importance of brain banking in dementia research.
Year(s) Of Engagement Activity 2015
 
Description GW4 Ageing & Dementia Conference 2015, Bristol, January 2015 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Talk describing opportunities for access and use of brain tissue fro research and means to apply for tissue.
Year(s) Of Engagement Activity 2015
 
Description Inside Government Dementia Challenge 2015 forum, London, September 2015 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Presentation on the importance of brain banking in supporting dementia research
Year(s) Of Engagement Activity 2015
 
Description Media coverage of South West Dementia Brain Bank - Bristol Post 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact Interview and video about South West Dementia Brain Bank and its importance for research
Year(s) Of Engagement Activity 2017
URL http://www.bristolpost.co.uk/news/bristol-news/bristol-bank-1000-brains-dementia-181229
 
Description Visit by Lord-Lieutenant Mrs Peaches Golding OBE 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact Professor Seth Love (SWDBB Director) and Dr Laura Palmer (SWDBB Manager) hosted Lord-Lieutenant Mrs Peaches Golding OBE on a tour of the South West Dementia Brain Bank and discussed progress in brain banking and dementia research in the UK, including studies in Bristol on the use vasoprotective agents in Alzheimer''s disease.
Year(s) Of Engagement Activity 2018
URL https://www.lordltbristol.org.uk/News-Events